In a case that could have broad legal implications for when some patients are allowed to die, an advocacy group is alleging that doctors at UW Hospital broke the law by withholding treatment from two developmentally disabled patients with apparent cases of pneumonia.

The guardian of one patient, who survived, at first went along with and then later disagreed with the decision to withhold care, the lawsuit by Disability Rights Wisconsin alleges. The parents of the other patient, who died, pushed for the withdrawal of treatment, according to the group’s complaint filed Thursday in Dane County Circuit Court.

One medical ethicist said the case could help to clarify a difficult question in state law: How much power do families and guardians have to make medical decisions for vulnerable patients such as children and the developmentally disabled?
Disability Rights contends state law prevents parents and guardians from withholding treatment from patients who can’t make that decision for themselves unless they are in a “persistent vegetative state,” a condition the group says did not apply to the two patients in the lawsuit.

But a spokeswoman for UW Hospital said the hospital acted in the best interests of both patients and tried to follow the wishes of their families.

“What is at stake in this case is no less than patients’, parents’ and families’ ability to make private health care decisions in the best interests of the patient,” spokeswoman Lisa Brunette said in a statement.

Disability Rights is suing to change hospital practices and to recover the $4,700 it spent investigating the cases, plus legal costs. Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life.

“It’s a great medical institution. They provide great care to their patients,” Hagopian said. “All we want is for them to provide that same great care to developmentally disabled people who are not dying.”

Dr. Steven Leuthner, a bioethicist at the Medical College of Wisconsin, has written about one of the legal cases cited by Disability Rights in its lawsuit.

Leuthner, who is not a lawyer, said the group had reached a plausible interpretation of a 2002 case in which a state appellate court found that parents could not withhold care from children not in a vegetative state. But he faulted the judges in that case, who he said incorrectly interpreted a previous Supreme Court case, making for a troubling precedent. The decision also left parents powerless to act in their children’s best interests, he said.

“That would be my hope of what would come out of this, that (the courts) would recognize the problem in” the previous case, Leuthner said.

No family members of either UW Hospital patient could be contacted because Disability Rights is withholding their names to protect their privacy. Neither family is involved in the lawsuit, which is focused only on the hospital’s actions.

In the first case, the family of a then 72-year-old developmentally disabled patient identified as “J.L.” complained to Disability Rights about “what the family believed was undue pressure on the part of a (UW Hospital) physician to terminate life-sustaining medical treatment,” according to the lawsuit.

On May 1, 2008, the patient was brought to UW Hospital with apparent pneumonia. After a discussion with Dr. Julia Wright that included J.L.’s quality of life, the family agreed to discontinue the patient’s medications and not use a feeding tube.
When J.L. woke up the next morning and asked to eat, the family sought to restart treatment but encountered resistance from Wright, the lawsuit alleges. Wright ultimately agreed to put J.L. back on antibiotics and J.L. returned to the nursing home to recover.

Wright could not be reached for comment.

Brunette said Wright is “well-respected and highly competent” and said UW Hospital doctors would only present options to families, not pressure them to choose one over the other. She disputed the lawsuit’s presentation of both the law and the facts of each patient’s case.

The complaint “in no way captures the patients’ true health status and the complexity of the decision-making process and the benefits and burdens of continuing medical treatment,” she said.

The other case involved M.E., a then 13-year-old patient with severe developmental disabilities that left him unable to speak. During the summer of 2006, the parents of M.E. worked out a plan with UW Hospital doctors to limit medical treatment for conditions such as pneumonia in the future because of his “poor prognosis and poor quality of life,” the lawsuit alleges.

In November 2006, M.E. developed apparent pneumonia and the staff at the long-term care facility where he was staying, Bethesda Lutheran Homes in Watertown, sought an order from his doctors at UW Hospital to treat him with an antibiotic. When UW Hospital doctors ultimately declined to give the order, citing the wishes of M.E.’s mother, Bethesda Lutheran staff decided to give the patient antibiotics anyway because they believed it was possible to treat M.E., the lawsuit alleges.

Bethesda Lutheran spokesman David Morstad declined to speak about the case, citing privacy concerns. But he said the staff at the Christian long-term care home believe those with developmental disabilities “should receive medical care for treatable illnesses just as non-disabled citizens do.”

“We believe that the law in Wisconsin is clear that people with developmental disabilities should receive medical care for treatable illnesses unless they are dying or in a persistent vegetative state,” Morstad said.

The boy’s parents objected to the treatment and transferred him on Nov. 20, 2006, to UW Hospital, where he did not receive treatment and where nutrition and fluids were stopped. From the hospital he was transferred to a hospice facility where he died on Nov. 22, according to the lawsuit.

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